The Foley Family - Trusting in God at ALL Times!!!

Thursday, November 01, 2007

Today we are in USA W&C hospital. Ivee woke at midnight with horrible congestion. Then a few hours later had a fever of 102.7. They will keep her for 48 hours to do cultures. Have to make sure her port isn't infected. Em and I believe we know what is wrong. She went to the Children's Medical Group office on Tuesday, and just as I figured would happen...she was fine when she went there (and for the record has not had any illnesses not cancer related since December of 06) ... and then a little after 24 hours of leaving the ped's office, she is sick. This happens every time we take her there. I just feel like we are walking into a cesspool of germs. Ironically, she told us to stay away from people who maybe sick, and to socially keep her isolated. That's not the problem. Well, I'll stop now. Just remember my back in your prayers. The hospital is not a comfortable place to sleep.

4 comments:

Anonymous said...: Oh Hope I am so sorry. I am praying the Lord will bring healing to Ivee and for you & Emmett's spiritual, physical, emotional & mental well-being. I think about the song Cathy sang, "God is still doing great things". Much love, Anna C.; Thursday, November 01, 2007 11:30:00 AM
Anonymous said...: Hope - So sorry that I am just now reading this. We were away in the mountains this weekend. Don't get me started on Children's Medical...I used the word hate when referring to that place today. I like her doc but there policies (i.e. sick appts) are INSANE!!!! When your child is sick you need a doc and it shouldn't matter what time you call...never mind. I hope Ivee is better and you are home sleeping comfortably again. I sent some PJ's that were Macky's by Aunt Karen. They were given to me and won't fit my chunk anymore (her gut is too big!) I know Ivee likes Nemo. I will be praying for you guys tonight. Many blessings, Paula; Monday, November 05, 2007 8:42:00 PM
Anonymous said...: Hope,
We hate hearing that Ivee is in the hospital again. Hopefully by now you guys are back home and she is feeling better. We constantly think about you guys and pray that things will start getting better for your family. Kirby had a trip to the hospital Friday as well, she put an aquadot in her ear and we had to get it removed! LOL!!
Take Care,
Becky & Dave; Wednesday, November 07, 2007 2:53:00 PM
debchastain said...: Hope she's feeling better now and that your back is okay too! That's so frustrating about the Dr's office... Blayne and I have been sick and I'm scheduled for sinus surgery at the end of this month (after 12 years of chronic sinus infections i guess its about time).; Wednesday, November 07, 2007 3:23:00 PM

Ivee's story in SHORT...As if....

Ivee is a tough little girl. And with our help and by the grace of God, all will go well. We pray for a complete healing, and we know that our God is big enough...He is the Great Physician.

Story: On a routine Monday, December 18, 2006. I was missing work and taking my oldest daughter to the doctor cause of a stomach virus. Stopping at a grocery store on the way, I left the oldest in the car for a moment and ran inside with Ivee. I put her car seat on top of the grocery cart as so many of us mom's do. Leaving the store, I turned for a brief moment to throw something away. I turned around just in time to see the entire car seat fall face down on the concrete. I flipped, as any mom with a 7 month old falling face first would do. I arrived at the ER in record time. She already had a huge knot rising on her forehead. As they (eventually) started a CT scan, I felt God speaking to my heart. In all but audible words he told me she would be fine, but that we would find something else, that this was why she had fallen, so He could reveal it to us. So, as I watched from the tech room, I saw something that even to me, a non-trained observer, knew was not suppose to be there. A friend of mine was the radiologist there, and he confirmed, also by doing an MRI, what I suspected. I was at peace in spirit cause my heart had been prepared...but not okay. My husband was working out in Texas and would have to drive more than 7 hours to come home, not knowing what was happening, but just that she fell. Ivee was transferred to a local children's hospital in Mobile. That night, Dr. Martino consulted, and would run an MRI the next day of his own, and perform surgery on that Wednesday. On December 20, after 5 hours of surgery, all was successful, and Dr. Martino removed 98% of what he knew was an egg sized malignant tumor, later diagnosed as Stage 3 Anaplastic Ependymoma. The remaining 2 cm was on her artery next to the spinal chord.

Deficits from initial resection/treatment: Ivee had many deficits due to the tumors removal, even though he was able to leave her nerves in tack. Her right eye was severely crossed. Her vocal chords were paralyzed (left has regained use). Her hearing was affected (loss at 2000 hz and high frequency sounds). Hearing aids received June 6, 2012 at age 6. Have already hear improvement in F, S and ending sounds in 2 days time! Her balance was never truly restored, and she has left side body weakness. After 30 days (including Christmas) we were allowed to take Ivee home. She had 6 months of chemo and then 33 treatments of radiation at St. Jude.

Procedures/surgeries:

1.) Tumor Resection (12/06) – Anaplastic Ependymoma

2.) Gbutton placed for eating. (01/07)

3.) Nissen fundiplication pyloroplasty done (wrapping of throat & stomach) (01/07)

4.) Chemotherapy Begins (01/07)

5.) 5 central lines placed (many fell out on their own) (01/07 – 05/07)

6.) Port placed at St. Jude (06/07)

7.) Chemotherapy ends (06/07)

8.) Radiation (06/07-08/07)

9.) Rare scar tissue formation in the brain removed (09/08)

10.) Shunt Placement (10/08)

11.) Shunt revision/replacement (02/10)

12.) Hip Displaysia surgery – Dega Osteotomy {Not tumor related} (10/10)

13.) Reoccurance - GTR {Gross Total Resection} (02/11)

We were shocked (as was the doctor) when her Jan. 2011 scan showed a reoccurance. It was on the same artery where the orginal tumor was left behind. GTR was done on February 18^th with much success. 2^nd dosing of radiation began March 28 and ended May 6, 30 doses.

14. Begin 2nd dose radiation on March 28 (30 doses) Ended on May 6, 2011.

Improvements:

1.) Right eye is still weak, doesn't require glasses yet. Patching the good eye to strengthen the right one.

2.) Right vocal chord is still partial paralyzed. In Fall of 2008 , to the doctor's dismay, discovered she has received movement again in right chord (update: Since resection in 2/11, Right vocal chord is completely paralyzed, no movement now)

3.) Still G Button feed. Cannot eat much by mouth. She doesn’t have the drive to try to eat, but we are treating her with an appetite enhancer. She has been approved through Modified Barium Swallow Test.

4.) Balance is still and issue. Has improved over the years. Uses a walker and wheelchair.

5.) Has learned to stand (assisted) for a few moments by herself and take some steps/usually across a room (May 2012). Uses a walker VERY WELL!!

6.) Currently watching a paraesophageal hernia of the fundoplication. No surgery required at this time.

7.) Non-cancer related surgery due to hip dysplasia in Fall of 2010. Has improved her balance and slipping out of socket.

Currently:

She is doing very well! She attended K5 full-time with a personal aid (might repeat K5). She is very smart and attentative. She used her walker often throughout the day and is learning to take independent steps. She takes a little bit of something to eat everyday now instead of once a week! She has learned to drink larger portions at a time. Enjoys Hippotherapy (horse therapy). Is extremely observant, caring and just down right funny!

About Me

Thursday, November 01, 2007

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